Hi Stellatum,

Don't overstress yourself about test results because that in and of itself can cause an aggrevation of your symptoms. I too have little eye involvement other than blurry vision when weak. The symptoms are an amorphous beast that makes diagnosis difficult. Did the neuro tell you how much jitter was observed on the nerve bundles? Keep your chin up!

Thanks, everyone! Your support is so helpful.

My appointment went well. Phew! The doctor gave me a prescription for Mestinon even though I'm sero-negative and SFEMG is borderline. So, I'm anxious to start. Of course the drug store didn't have it in stock, so that will be tomorrow.

Do you think I'll notice results right away? Or does it have to build up in my system first or something?

I'm so relieved to be moving on to the treatment stage, finally, even if the diagnosis isn't fully established. It's been four months since my symptoms started. I know that's not long compared to many stories--but I've been steadily getting worse, and very anxious about what it could possibly be. I know you all understand that!

That's great news Stellatum!

You will notice the difference immediately. Mestinon only lasts for about 4 hours (and takes effect 20 minutes or so after taking it).

I could feel it kicking in - and easily noticed when three and a half hours had passed. But in between those times, I just felt normal without muscle fatigue. Now I am quite content with 30 mg 4 x/day - - but take more when very active or in the hot, hot weather.

My neuro has given me parameters to work with now (as opposed to a specific dose at specific times). But they started me out slow and followed up frequently until they were sure I had the hang of it. Too much Mestinon can have the same symptoms as too little.

Anyway, sounds like you have an 'enlightened' neuro - and you will do fine. So glad it worked out this way for you!!

Sue

Hooray! I hope the Mestinon helps.

When I first started to take Mestinon I didn't notice anything for about 4 or 5 days.

It took 5 months for Mestinon to do more than just minimize my symptoms (which was wonderful and I stopped getting new symptoms!). I think this was mostly due to me trying to get the dosage correct, but maybe it does take a while for Mestinon to help fully.

I did reach a maximum effectiveness for Mestinon after about 5 months.

Too much Mestinon is as bad if not worse than not enough so be careful and pay attention to your body.

That's good news! I would suggest you take the Mestinon with food and plenty of water. It can have some nasty side effects and taking it this way helps to minimize them. You may not have any at all. I just happen to be one of the lucky ones that does. Aside from that, it's a wonderful drug and usually does it's job well. What mg is he starting you out on and how often? Good luck and let us know how you're doing.

Hugs,
Pat

Hey, that's great news. I noticed it right away. With in 20 minutes I noticed. I don't remember the exact time in minutes, but it usually kicks in around 15 to 20 minutes, and be sure to take it after eating some toast, or crackers. GI problems are a problem with Mesty. I have to take Welchol to help me with the side effect of Mestinon. But you may not have any GI problems, something for which I pray!
Best of Wishes
Love Lizzie

Thanks, everyone. I took my first pill yesterday with food and plenty of water, as you all recommend, and I was relieved to find it didn't make me nauseous. Didn't seem to help my symptoms, either, but I know it's way too early to tell. For all I know, it could have headed off a really bad flare-up--I was due for one, having had two good days in a row, and then a very busy morning. So I'll keep taking it regularly and try to reserve judgment for a couple of weeks until I can see the big picture.

My neuro gave me 60 mg. pills and told me to start with two a day, and try three a day if necessary. Since everyone tells me they work immediately and last for about four hours (the doctor didn't tell me anything about them at all), I'm going to take them with lunch and supper, since I ordinarily feel good in the morning anyway. That makes sense, right? That ought to give me the best chance of preventing my usual late afternoon and early evening shut-downs.

Thanks, everyone, for all the support and information.

Today, I _definitely_ noticed a difference with the Mestinon!

Yippee!! That's terrific news!

Great news!!!! I'll keep my fingers crossed that it's all you need!